Table, Apple, Penny… whatever happened to Haathi, Roti, Chacki??

This is really interesting. Thanks for telling us all about your great work.

Meri Yaadain Dementia

Dementia has quickly become a worldwide issue. People are living longer, healthcare has improved, education is more available and the world is more connected. This has led to us becoming acutely aware of social issues affecting our populations, one of which is dementia amongst our growing numbers of older people.

Dementia is a collective term for a number of conditions that affect the brain. Whilst Alzheimer’s disease is probably the best known of the dementia variants, each one has it’s own associated behaviours or characteristic symptoms. These can range from being forgetful, finding it difficult to communicate, losing a sense of direction and orientation or adverse behaviour. It is not just an ‘older’ persons’ disease but can (and does) affect younger adults too.

In the UK there are approximately 820,000 to 850,000 (depending on whose figures you quote), people living with dementia. Of these it is estimated that around 14,000…

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The long and winding path(way)…

     

It’s not all bad!

In fact, this week has been inspiring.

At our Shropshire Telford and Wrekin Dementia Action Alliance meeting members told us what they’d been up to. The list is impressive.

Telford schools have been emailed with an offer of dementia friends awareness sessions for PHSE.

Dementia roadshow held at PRH hospital.

Telford taxi licensing dept has been approached about including dementia friends sessions in driver training.

Over 500 people have attended church services which included dementia friends awareness, and 124 people have completed the church based 4 session dementia training course.

The Lichfield Diocese dementia worker is promoting use/creation of boxes.

T&W Senior Citizens Forum is delivering musical memories sessions.

Almost all fire and rescue staff have now done DF awareness, full time and retained.

Fire and Rescue provide home fire safety visits with support from the Memory Service re PWDs.

Shrewsbury Job Centre staff have done DF awareness, and it is planned to cover the job centres.

SATH is hosting a dementia conference on May 18th 2017.

SATH is introducing a refreshed Dementia Care Bundle and pathway to improve individualised care for patients. Also delivering training on recognising pain in PWDs, and improving diagnosis and treatment of delirium.

Whitchurch community hospital doing great dementia related activities, such as scarecrow

and other craft sessions, Queen’s anniversary tea party, with the Queen present,

…a sensory garden has been developed, a reminiscence corner.

Telford Day Care Centres staff have received DF awareness.
Police are working to develop systems to make it easier to find missing people quickly.

And we’ve got four new members in the last couple of months.
Also this week…

Someone tweeted me asking if there is any dementia pathway at all in Shropshire, in response to another of my desperate pleas for action here.

Well, we’re working on it! But is it a pathway?

What is our journey with dementia?

Well, it goes from start to finish, so it can be mapped. Afterwards.

But is a dementia journey linear?

Probably not.

Dementia is a terminal illness, so we know where we are going. But we all take different routes,

Some quick, many slow.

Up and down, crisis and recovery,

Other illnesses come and go, sometimes stay.

We don’t know when we’ll need help, what that help would best be, or for how long.

So we need to dip in and out.

As Laura said, “right place, right time”.

Not in a pre-defined sequence.

We can’t actually define a dementia care pathway, nor should we try.

Think of it as a large block Lego set.

Make sure all the pieces required for the model are in the box.

Available, easily found, visible.

I’ll make my model at my own speed, and I might start with a different part of the model than you.

The finished model will be different. You might build a castle, me, a fort. Someone else a palace.

Some blocks will not be used by me. Others by you.

But without the full set of Lego most of us cannot complete our models. We’ll get stuck.

At the moment we can only little sandcastles.

There are few blocks for structural resilience.

So most sand castles slip down, wash away, and we have nothing to support us.

Let’s make a huge, resilient box of Lego bits, enough for everyone who needs them, and all beautifully coloured and easy to find.

The Lego box of dementia care.

All you could ever need in one box.

Which you pick from at the right time in the right place.

Laura, you star!

My wish for dementia

Every day, either in a quote within a picture, or on an email footer or article about dementia, I see the wish for “A World without Alzheimer’s (or Dementia)”. For World Alzheimer…

Source: My wish for dementia

When will we care?

Dementia is a Cinderella thing

I was in a meeting the other day about improving dementia care in community hospitals and other community health services.

Who came?

One senior manager. One premises management staff. Two nurses. And four volunteers.

How many were invited? Probably twenty or more staff and managers from across many services.

What did we talk about?

Great things that volunteers and our two nurses are doing in two community hospitals. Really making a difference for patients and their carers.

Communication, reminiscence, memory corner, butterfly cafe, craft activities, flower arranging, scarecrow making, harvest festival…

All down to the goodwill and determination of a few.

What about the other staff?

Oh, we haven’t got time to issue the This is Me leaflets.

If patients do have these they are often stuck away in notes.

No, we don’t use the butterflies on wristbands.

It takes volunteers up to six months to get reimbursed for payments for memory stuff, or ingredients for cakes. So people often give up asking.

Volunteers get little or no support or enthusiasm from staff for their work with patients. It’s a struggle to get permission to this or that.

And then we are told that the speech and language therapists are only commissioned to support and train in the neighbouring council area because our own CCG will not find them.

Need help with swallowing? Don’t live in Shropshire.

Need help with communicating with your loved one? Don’t live in Shropshire.

God help us. Change your post code.

In another forum I’m leading one of five work streams to design a new Dementia Care Model for the area. Great effort of co-production (could we shall it “working together”?).

We’ll be proposing a pathway/journey which will enable all people living with dementia and their carers and families to get the support they need when they need it.

Before crisis.

And as Chris Roberts said last month elsewhere, why on earth haven’t we got a national dementia care pathway? An entitlement for all.

Not dependent on a CCG to decide whether to fund it. Or even whether to have a model.

Like other care pathways, for stroke, for cancer, for diabetes…this is what everyone, anywhere, should get, if and when they need it.

Until we get that many of us will just live off the crumbs that are left behind by commissioners who can’t get their act together, who put dementia at the bottom of their list.

It’s not about money.

It’s about choices. Equity. Human rights.

Dementia is far from a Cinderella thing to live with, but it’s certainly in Cinderella commissioning land.

Why do some care staff seem to regard dementia as not part of what they should be looking after, when a person comes into hospital with something else? Behaviours to be tolerated, controlled, hidden away, ignored if possible.

Oh no, we haven’t got time for that. We’ve got to fill in forms. Just sit there in the corridor where I can keep an eye on you.

No, stop shouting at me.

Sit down please.

Don’t swear at me.

Where are you going? I’ll have to put you back in bed of you don’t sit still…

Yet there are many who really do get it. And I have seen fabulous caring, and I know of wonderful efforts and improvements being made locally.

But it shouldn’t be chance.

Getting good stroke treatment is no longer a lottery. It’s planned and evidence based.

Getting empathy and understanding care when you have cancer is the norm, almost universal.

But dementia?

Nope.

Not yet.